By the time my grandfather was my age, he had been torn away from his home and family, endured five years of forced labour and started a new life, alone, in a foreign country. This is what was weighing on my mind when I got the call that he was dying.

It was a call I’d been expecting for months and the reason I bristled every time “Home” appeared on my call display. At 90 years old, he hadn’t been the same since my grandmother passed in 2011. His short-term memory had been fading ever since, as if he didn’t want to remember a world without her. A broken hip sustained several months ago stole his mobility. It was time.

Later, as we pored over decades of his expansive photo collection, it was apparent the years before his life in Canada began were absent. As a child, I’d only heard bits and pieces of his early life in Poland — the war, the camps, his passage across the Atlantic. When I learned the history of the Second World War in elementary school I realized that part of that awful history was also part of my own, of my grandfather and grandmother. They never spoke of it in detail, especially my grandma, who seemed determined to leave whatever horrors she’d endured after Germany invaded in the past. Even when I was older, it felt rude to ask, to compel them to recall a life they were lucky to have left behind. But, as I flipped through those photos, it was clear we’d lost more than a grandfather — we’d lost a part of our history. I felt foolish for not having pressed him for more.

Provided

What we are left with, however, are 10 single-sided, neatly typewritten pieces of paper, titled “My Biography.” Several years ago my parents asked him to write down his life story, but he was reluctant at first; water under the bridge, as he put it. He became more agreeable as my parents explained they wanted to preserve his history, both for my brother and I and for future Strapagiels. It took him several months sitting at his old typewriter to fill those 10 pages and they tell a history I cannot forget.

He was born in a small rural village in central Poland in 1924, one of seven children in his Catholic family. They were living in the city of Kalisz when Poland fell to Germany and in May of 1940, having just turned 16, he became one of the millions of Eastern Europeans rounded up and deported from their home country. He described being crammed into a train car, like cattle, for the ride to Hannover. From there he was ordered into forced labour on a farm, a “P” badge affixed to his chest lest anyone mistake him for a German rather than a slave.

He worked on that farm for five years, tending to oxen, hauling potatoes and clearing trees amid air raids and “hateful” treatment. He uses euphemisms for the worst of it, writing “many of the slaves were eliminated in the inhumane style, in the labour camps and concentration camps. Those who were still alive counted days to see the end, which was still far away.” It wasn’t until 1945 that American soldiers arrived and liberated those who were left. “Free at last,” he wrote. “After five long years … WE ARE FREE.”

He also wrote of his journey to Canada in 1948, of meeting my grandma — a “beautiful young lady” — on the ship’s deck, of losing her when they landed in Halifax, of finding her again years later in Montreal and marrying her. Of how they bought a piece of land across the river in Longueil where they built their own house, the same house I visited every summer. He wrote of the joy he felt when my father was born, and years later when my brother and I came along. He wrote of how proud he was of us all.

I think he shared as much as he intended to, and I am thankful that he did

By the time he was done writing, he was eager to share his story, like he’d been given permission to make permanent what was to him simply life, but to us a legacy. Modest as he was, on the back of the final page of the memoir, pencilled in his neat cursive, he wrote, “Give this to the children to read, if they are interested.” Even now it’s hard to reconcile a dark past with the guy I called grandpa. He was a strong but gentle sort of patriarch who would blast talk radio every morning, loved nothing more than tending to his vegetable garden and would chat up anyone he could lure in with the seven languages he spoke. But that’s not all he was, and had he not put his life onto paper, I may never have known the whole story.

I suspect we all have questions we wish we could ask departed loved ones if only we could have just a little more time, if only we’d been more careful with the time we did have. But, having read those pages over and over, I think he shared as much as he intended to, and I am thankful that he did.

My generation jokes that, thanks to social media, our children will know every detail of our lives, every drunken party caught on camera, every small moment memorialized in 140 characters. Recording personal history has become trivial — but I hope we don’t forget the weight of written words and leave more than hashtags in our wake.

I was recently diagnosed with Stage IV cancer and have been told that I probably only have a few years to live. My husband and I have talked through many of the end-of-life issues, including hospice care and cremation versus burial. I find that my biggest fear is related to my memorial service. I have two siblings who are not close to me, my family, or my parents, but they are known for attending family funerals and giving “no holds barred” eulogies filled with criticism of the departed’s life and choices. Since I obviously won’t be there, sometimes I think it really shouldn’t bother me. But I find the thought of my teenage children listening to their vitriol very upsetting. Should I handle this by leaving written instructions with my husband outlining who can speak, or am I putting too much pressure on him during what will be a difficult time for my family? He is very loving and supportive, and will do whatever I ask him to do (within reason)!

—Fear of Funeral Frankness

Dear Fear,

I hope you have many more years than you expect and that they are good ones. I admire your clear-eyed ability to address what is a devastatingly painful situation. When it comes to planning one’s funeral some people just don’t want to think about it; some people express general wishes (cremation not burial, memorial service not funeral); some people orchestrate every detail, from the music to the speakers. Of course, each of these choices is valid. You can make whatever decisions you want, let your husband know your wishes, and then put your funeral out of your mind. It’s a good thing your husband is open to talking with you about this, because sometimes loved ones can’t bear the impending loss, and so try to prevent this conversation. As far as the specifics of your situation and your awful siblings are concerned, you need to do whatever is necessary for you to stop dwelling on them. I have been to memorial services at which the microphone is open to any friends or loved ones to share a memory, and the tributes were wonderful. But I’ve also attended a funeral where a childhood friend walked up and asked the rabbi if he could speak, and was redirected back to his seat. If you fear your siblings would hijack the event, then specify that they should be barred from speaking, and ask your husband to assure you that the necessary steps will be taken to keep your jerk siblings away from the mic. We’ve all been to weddings and funerals at which a speaker becomes inappropriate. No one in the audience thinks it reflects badly on the person being honored; everyone thinks badly of the person speaking. It may be you’re focusing on your siblings as a way to distract yourself from the enormity of what’s happening. But once you take care of this detail, please put them out of your mind. Knowing they have no power should empower you.

—Prudie

Dear Prudence,

In the 1970s, my brother’s classmate was murdered. He was in elementary school. Shortly before his death, the boy had come to my brother’s birthday party, and my father took a nice photo of the boys in the local park. Many were striking funny poses—the boy who was killed is smiling sweetly, standing among his friends. Whenever I look at the picture, I wonder if his parents would like a copy. I recently asked my parents if they thought we should send the photos, but they thought it would be wrong (bizarre, cruel, etc.). What do you think? Would it be a wonderful gift—or a painful shock—to receive a heretofore unseen photo of their son from some party they probably don’t remember from more than 30 years ago?

—Holding On to an Image

Dear Holding,

Your question made me think of the front page story this week in the New York Timesabout the testimony of the mother of Etan Patz, the 6-year-old boy who disappeared in 1979. His case has been reopened, and it’s no surprise that his mother Julie cried when recounting the day the family realized he was missing. But I was also struck by this: “She was composed through most of her testimony, even laughing at memories of her boy’s burning desire to be grown up, to go to school on his own.” That article reinforced my belief that you should give the family the opportunity to have the photo. It might be a shock from them to receive, unprepared, an envelope that contains a previously unknown photo of a long-dead child. So contact them, tell them what you’ve explained here, and ask if they would like a copy. I’m sure they won’t say no. Then, when it arrives, they can decide if and when they are ready to open the envelope. I think it’s likely they will be grateful to you and will treasure this new memento of their lost son.

—Prudie

Chloe Cushman/ Financial PostHow do you solve a problem like a gossipy co-worker?

Dear Prudence,

I am a 28-year-old happily married mother of two. I recently discovered that one of my co-workers, “Mac,” spread a wholly untrue rumor about me to many people in my department. A little while ago, I got a Facebook message from a co-worker saying she had overheard that my husband and I were swingers and asking for more information about the lifestyle. I responded that I was not a swinger and that she was misinformed. After questioning another co-worker, I learned that about a year ago Mac told many people in my department that my husband and I were swingers. Additionally, he told several people that he had stopped going to a weekly social event because I had made him feel uncomfortable after propositioning him. None of this is true! I thought Mac and I were friends, although he’s always been an attention seeker, a smooth talker, and a storyteller. Mac has since quit this job and moved out of state. I work with wonderful people who treat me professionally and respectfully. (It took a year to learn that this rumor even existed.) Now, I walk the halls wondering who thinks I’m a sexual predator. I am not sure how to go about clearing my name, and I would also like to let Mac know how his lies in the workplace are hurtful. I am considering giving him a cathartic phone call, or should I just let it go?

—Feeling Compromised

Dear Feeling,

I have the feeling that most, if not all, of your co-workers weighed what they know about you with what they knew about Mac and settled on concluding Mac was a whack job. You ended up hearing the rumors only because someone was hopeful enough the swinger part was true, so that she might get to engage in some after-work socializing with you and your husband. Do not contact Mac. Blessedly, he’s out of your life. Now some other innocent co-worker is likely dealing with his craziness. If the rumor was fresh, I would have suggested you take action. If he were still there you would need to confront him, talk to HR, even threaten him with a defamation suit, while also letting the blabbiest office members know you were talking to a lawyer about his false accusations. But the rumor is old and Mac is history, so I think letting this go is better than stirring it up. The woman who inquired about swinging has every incentive to keep her mouth shut. The friend who enlightened you also heard your shocked denials. I think you’ve done all the damage control you need, because it doesn’t appear that the malicious Mac did any damage to you.

—Prudie

Dear Prudence,

I’m a young guy who’s in a monogamous relationship with my sweetheart from college. We did the long-distance thing successfully, and now we’re living together. Everything is awesome. He gets me, he makes me pancakes, we’re totally sexually compatible and into the same things. There’s just one problem: He does not enjoy spooning. He says it’s uncomfortable for him because he doesn’t know where to put his bottom arm, and my voluptuous hair gets in his face. Spooning is one of my favorite nonsexual (and sexual) things to do together because I like the feeling of my butt on his junk. I’ve told him this, and he says he understands, and so he’ll sympathy-spoon me for a few minutes, but it’s just not the same. How do I get him to want to spoon me? Also, he’s fine with being little spoon, but I don’t want that. Plus, it’s not fair if he gets to be little spoon and I don’t. We need your help.

—The Lonely Spoon

Dear Spoon,

You need to stick a fork in this. Let’s put aside your general happiness and the great sex, he makes you pancakes! If spooning where central to your sexual expression, then you’d have a real problem. But it’s not the entrée, it’s dessert. You like some aprèscuddling, and you want to be the demitasse, not the soup spoon. But for him, impersonating a silverware drawer hurts his arm and obstructs his breathing thanks to your abundant locks. Yet he’s such a good guy (does he also make waffles?) that he’s generous enough to give you a little sympathy spooning. Every couple, no matter how compatible, has points of incompatibility. Be glad yours is over something so minor. Some people’s incompatibilities make them feel as if they’re being knifed in the heart.

]]>http://news.nationalpost.com/arts/dear-prudence-help-im-dying-of-cancer-and-i-dont-want-my-siblings-to-speak-at-my-funeral/feed/1stdA woman holds the hand of her mother who is dying from cancer during her final hours at a palliative care hospital in WinnipegChloe Cushman/ Financial PostBarbara Kay: Euthanasia is so accepted that doctors must now justify prolonging a lifehttp://news.nationalpost.com/full-comment/barbara-kay-euthanasia-is-so-accepted-that-doctors-must-now-justify-prolonging-a-life
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In 1994, Dutch journalist Gerbert van Loenen’s partner Niek underwent surgery to remove what was thought to be a pea-sized brain tumour. More complicated than predicted, the operation resulted in a brain injury that left Niek permanently disabled, yet still able to enjoy quality of life.

Van Loenen willingly reorganized his life to care for Niek at home. But after four years, his career needs necessitated moving Niek to a wheelchair-accessible unit across the street from a nursing home, where he was content for six more years until the tumour returned, whereupon he died a natural death.

Van Loenen found himself brooding over certain friends’ reactions to their situation. “It would have been better if he had died,” one said at the outset. Another told Niek when he expressed frustration, “You choose to go on living, so you have no right to complain.” Once “an average Dutchman who thought of euthanasia as one of the crown jewels of our liberal country,” van Loenen became “someone who was shocked by the harsh tone used by the Dutch when they talked about handicapped life.”

He wondered if their attitudes could be traced back to the Dutch euthanasia law of 2002. The result of his curiosity is a forthcoming book, Do You Call This a Life?Blurred Boundaries in the Netherlands’ Right-to-Die Laws. In it, the author traces the intellectual evolution behind the euthanasia law, the disparity between what people think the law permits and what it actually says, and the shift from self-determination — the principle from which arguments for assisted suicide and euthanasia always begin — to the “better-off-dead” judgmentalism van Loenen witnessed in his friends’ responses to Niek.

The ideal candidate for activists’ promotion of euthanasia or assisted suicide is a pain-tortured or disabled individual (or one about to become so) whose mind is crystal clear, and who demands the right to die on his own terms. Activists see these individuals as courageous, those who would refuse to help them as cowards, and their “right” to die as self-evident. Such activists often point to the Netherlands as their model for euthanasia progressivism.

In fact, the law endorses a species of medical “paternalism”

But the Netherlands’ euthanasia law does not recognize any such right. In 1984, the country’s Supreme Court accepted euthanasia, but rejected self-determination as the driver. The law in fact focuses on the right of the physician to exercise his compassion in what is deemed a “situation of necessity.” Citizens “may request,” but cannot demand, euthanasia. So in fact the law endorses a species of medical “paternalism.” Van Loenen claims this compassion-based perspective “is the opposite of self-determination,” which he continues to support.

One of van Loenen’s settled convictions is that what begins in compassion invariably creeps over to the dark side. Up to 1,000 Dutch citizens are killed every year without express consent, according to van Loenen, either because they are incompetent (dementia) or in comas, or too young. In 14% of the without-consent cases, people are actually competent, but not consulted. Typical reasons given for euthanasia by doctors in such cases are “consultation would have done more harm than good,” or “this course of action was clearly the best one for this patient,” or it was “the request or wish of family” — a far cry from the self-determination principle debate began with.

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These doctors have acted outside the law, but are rarely convicted, as judges are reluctant to call “termination of life without request”… murder. Indeed, van Loenen says, cultural acceptance of euthanasia has progressed to the point that it is no longer the physician who ends someone’s life without request who must justify his actions; rather it is the physician who decides to prolong a life perceived as meaningless who feels societal pressure.

For me the most unsettling aspect of this fascinating and informative book is the marginalization of the central actor — the “better-off-dead” person — as the discussion turns more and more to the sensibilities of those who are affronted by his continued existence.

In a disturbing illustration of this shift, van Loenen describes an award-winning 2006 Dutch documentary film about resuscitation, I Don’t Ever Want to Be Famous, ostensibly featuring former cellist Tobias, disabled after a cardiac arrest and difficult post-resuscitation recovery. Van Loenen observes that Tobias seems content enough, and far less troubled by his straitened condition than some of his relatives, who candidly state they wish he had died.

At issue is whether Tobias should be resuscitated in a future incident. The family is shocked to discover that Tobias’ anthroposophic care facility has a policy of resuscitation. The distraught mother complains, “Nobody told me … that there are so many taboos.” His sister says, “I am sure this is not what he would have wanted. I am sure he would have said: euthanasia!” Whereupon Tobias says, very clearly, “I don’t want to die.” Nobody responds. This film is not really about him, or his wishes, or his rights.

To be continued in my column next week.

National Post

bkay@videotron.ca

]]>http://news.nationalpost.com/full-comment/barbara-kay-euthanasia-is-so-accepted-that-doctors-must-now-justify-prolonging-a-life/feed/5stdNetherlandsExit strategy: ‘They want a promise from their doctor, that when they don’t want to live, they can stop living’http://news.nationalpost.com/health/exit-strategy-they-want-a-promise-from-their-doctor-that-when-they-dont-want-to-live-they-can-stop-living
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The last of a three-part series examines living while dying: Exit strategies.

On a warm summer day in 2011, Alain Berard learned he would die from a disease that will eventually take away his ability to move, swallow or breathe on his own, before it kills him.

It took 11 months for doctors to understand what was going wrong inside his body. Once an avid runner, Alain began experiencing cramping and fatigue in his legs. He thought he was over-training.

Then he started having trouble swallowing.

His heart, blood and thyroid gland were checked before a specialist saw the tremors and quivering at the back of his tongue.

A lumbar puncture and brain scans were ordered, to rule out multiple sclerosis and other neurological disorders, and as each test came back negative, Mr. Berard’s panic grew. He remembered the pictures on TV only months earlier of former Montreal Alouettes star Tony Proudfoot, who died of amyotrophic lateral sclerosis, or ALS — Lou Gehrig’s disease, an illness that normally ends in death within two to five years.

“I would have taken any other diagnosis before ALS,” Mr. Berard, now 48, says.

ALS is one of the most devastating diseases known to man, an incurable illness that attacks the nerve cells in the brain. But ALS is also a disease apart, because it allows patients to create what neurologist Dr. Angela Genge calls an “exit strategy” — and we can all learn from them how to better prepare for our own deaths.

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“We tend to live our lives as if life is infinite,” says Dr. Genge, Mr. Berard’s doctor and a director of the ALS clinic at the Montreal Neurological Institute and Hospital.

“These patients go from that mindset to, ‘I’m dying, and I’m going to die a death in which I become disabled.’ This disease becomes extremely scary.”

But then two things change: most people recover from the diagnosis, psychologically, Dr. Genge says. “They know what is going to happen to them, and then each signpost along the way is another step, another conversation,” she said. What is it you need to do before you die? How much do you want us to do to keep you alive?

“It is very common that they want a promise from their doctor, that when they don’t want to live, they can stop living. They can die. They want control over what will happen.”

Mr. Berard is now three-and-a-half years into his dreaded diagnosis. He looks incongruous, sitting in his wheelchair. The pieces don’t fit: He is six feet, three inches tall, with broad shoulders and chest. Yet he is speaking frankly about whether he would ever accept a feeding tube in his stomach, or a tracheotomy — a surgical incision in his windpipe so that a ventilator could pump air into his lungs.

His wife, Dominique, a schoolteacher, has been taught the Heimlich maneuver and what to do if Mr. Berard suddenly starts choking. She is petite, but strong. She is preparing for the day she will have to take over complete care of her husband, “because I will be like a child, like a baby,” Mr. Berard says.

He doesn’t know yet how much he would be prepared to endure, or, if his condition worsens after Quebec’s “medical aid in dying” law takes effect, whether he would consider asking his doctor to help end his life

“It’s always a debate. What would I want for myself, and for my family?”

As the Supreme Court of Canada weighs lifting the federal prohibition on assisted suicide, in Quebec, the hypothetical will soon become real.

The Quebec law is expected to go into effect at the end of this year. A special commission established to set the ground rules for assisted death will begin work next month.

Some believe assisted suicide is already occurring in far less desperate ways — with the help of doctors.

In 1994, witnesses testifying at a special Senate committee on euthanasia said physician-hastened deaths are happening clandestinely, and that the law, as it now stands, is not being enforced.

“I have spoken with physicians who have been involved directly in the process. I know for a fact that it does occur on a regular basis,” Dr. Michael Wyman, a past president of the Ontario Medical Association said.

Dr. Jeff Blackmer, the Canadian Medical Association’s director of ethics, acknowledged there are anecdotal reports doctor-assisted deaths are occurring in Canada.

Christinne Muschi for Postmedia Newslain Berard, who was diagnosed with ALS poses with his family at home in Blainville, Quebec, January 6, 2015. (From L- Dominique, Alain, Noemie, Charlotte)

“But I think it’s important to note that I have never had a doctor tell me, either in person or online or otherwise, that they have participated in this type of activity. Never once,” Dr. Blackmer said.

Last summer at the Canadian Medical Association’s annual general council meeting in Ottawa, some doctors said dying farm animals are treated more humanely than patients, and that there are times when the most compassionate thing to do is to stop a heart beating.

People with ALS fear two things: dying by choking, or dying by suffocation. Dr. Genge tells her patients: These are not untreatable problems you have to suffer through. “We can manage every one of those symptoms so there is no suffering,” she said.

Diane DoironGreenhouse duty! Potting up tomato plants that were started over three weeks ago and now are ready for larger pots.

“The disease itself put you in a certain state. But the only way you die from ALS itself is by respiratory failure, and if you remove that piece by going on a ventilator, then you literally continue until other organs, like the heart, fail,” Dr. Genge said. One patient who died last year had been on a ventilator, at home, for 17 years.

Without ventilation, the prognosis is two to five years.

Mr. Berard understands his disease is following an arc. “I’m pretty close to the edge, where it’s going to fall off. But I do my best not to overexert myself.”

He and Dominique have installed a lift on the ceiling above his bed in a specially renovated room. He has chosen where he will be cremated and buried. “I can go and see where I’m going to be.” He is preparing a Power Point presentation for his funeral — photos of himself with his girls, Noemie, 20, and Charlotte, 17, and videos of his impersonations of Quebec politicians.

“I’m in a wheelchair. This I can cope with,” says Mr. Berard. “But there will be a time that it will be too difficult for me and my family to see me in this condition.”

Tyler Anderson / National PostA model shows a piece by Laura Siegel at World Mastercard Fashion Week in Toronto

He supports Quebec’s law that could give people like him a more gentle death, should they choose it.

“I consider it as an option, like a feeding tube, or a tracheostomy. It’s like a treatment for the end of life, when the illness is too difficult to cope with,” he says.

“When you say, you know what? I’ve had enough. I don’t want to do this anymore.”

This second of a three-part series examines living while dying: How to improve the quality of life until the last breath.

Gerald “Jerry” Dill lay face down and semi-conscious on the operating table as the doctors drilled into his spine.

When cancer spreads to the vertebra, the bones become fragile and can collapse. Nerve roots coming out of the spine get pinched, causing serious pain. For Mr. Dill, the pain came in sudden and furious bursts. Pain that would hit “like a linebacker,” the 67-year-old says. Pain that shouted, “Here I am!”

In December, surgeons drilled into his crumbling vertebrae. Next they inserted a small balloon, re-expanded it and then injected bone cement into the bone, to keep it from collapsing again.

The relief, he says, was almost instantaneous. “I literally got up from the table and walked.”

In 2012, Mr. Dill began experiencing tightness in his chest. He thought he was having a heart attack. The diagnosis was terrifying and grim: stage four prostate cancer that had already spread to the bones.

Mr. Dill started a new round of chemotherapy Monday. He is also receiving palliative care, including pain control and psychosocial and spiritual support to deal with “my psychological and mental attitude towards things.”

“I’m dealing with it well, I’m a fighter,” he says. “But I’m learning not to get too far ahead of myself.” He worries about his teenage daughters, “my joy.”

“My kids are very well aware that this is a life-threatening disease and they spend time with me, they talk with me,” he says.

“They know that I can be out of here at any time,” says Mr. Dill, a man of strong faith. “I’m at God’s calling right now.”

For years, the philosophy was that patients with terminal illnesses received “active” treatment up until the very end, and only then were they offered palliation, or “comfort” care, in the final hours or days of life.

The push now is to provide palliative care sooner and include it with usual medical care.

The goal is to live well until dying, not hasten or postpone death.

More than 250,000 Canadians will die this year. The vast majority will not receive access to high-quality palliative care in their home, hospital, or long-term care facility, because end-of-life care is being virtually ignored in discussions around health reform, even with a rapidly growing aging population.

Watching a loved one die a bad death “turns the promise of a peaceful exit from this life into a lie,” Harvey Max Chochinov, director of the Manitoba Palliative Care Research Unit at CancerCare Manitoba, wrote in a recent commentary in HealthCarePapers.

“For all too many Canadians, that is the lingering memory they carry of their loved one’s death.”

Groups such as the College of Family Physicians Canada say that, as a matter of social justice, all Canadians should have access to quality, end-of-life care.

Demand for residential hospices, most of which rely heavily on charitable donations, is so great people are dying on gurneys in emergency rooms.

Exhausted and emotionally drained caregivers often struggle to get the support they need to care for loved ones at home. Dying patients are languishing on hospital wards, simply because there is nowhere else to send them.

“In Canada right now if you’re at the end of your life and you haven’t been referred to a hospital-based palliative care program or a residential hospice, you are going to end up in hospital. It’s inevitable,” says Sharon Baxter, executive director of the Ottawa-based Canadian Hospice Palliative Care Association.

‘[My children] know that I can be out of here at any time. I’m at God’s calling right now’

Before any change in law regarding euthanasia, the organization says every jurisdiction in the country should move swiftly to improve access to end-of-life care, including hospice care.

The goal of hospice care is to determine what’s important, and what is meaningful, when patients know that no heroic intervention is going to take away their disease.

They are places that celebrate life through death, says Debbie Emmerson, director of Toronto’s 10-bed Kensington Hospice.

“We’ve had football parties here, we’ve had baby showers.” Some patients arrive at the hospice, the former chapel of St. John the Divine, in their finest outfits — full makeup and wig, or their hair done up. “They’re just trying their very best to be as dignified and normal as possible,” Ms. Emmerson says. The hospice has cared for prominent doctors and the homeless, for patients in their 20s to centenarians.

“There are a lot of questions about, what’s going to happen next? Where am I going next? Is there a God? Is there reincarnation?’” Ms. Emmerson says. “We don’t have those answers, but we can certainly sit and listen.”

They call it sitting with suffering — “creating this presence so that you know that you’re not totally alone in this journey that you are having.”

Peter Power for Postmedia News“I’m dealing with it well, I’m a fighter,” Jerry Dill says. “But I’m learning not to get too far ahead of myself.”

Elizabeth (Lynn) Douglas was moved to Kensington in March 2013. She was a vice-president at the Princess Margaret Cancer Foundation, a role she took on after a long and successful private-sector career. The day after she was admitted, the resident doctor went to her room and introduced himself. “We chit-chatted for a minute, and then Lynn turned to him and said, “So, how is this going to go?” her husband, Cameron, remembers. She applied the same attitude towards her diagnosis as she did to her career and life. “She was incredibly pragmatic about things.”

Ms. Douglas was first diagnosed with breast cancer in January 2010. She had chemotherapy and radiation but then the odds gradually started to build against her, and when it was gently suggested she and Cameron visit Kensington, they did so, “never imaging it would come to that,” he says.

They decorated her room with family photos, of Ms. Douglas with her wonderful boys, Scott and Todd. She had her favourite crossword puzzle pajamas and the stuffed animals friends gave her while she was in hospital. They brought in a music therapist who played A Million Stars on her violin.

Ms. Douglas spent five weeks at Kensington. In the last week, he and his sons took shifts, sleeping in her room overnight. “We needed to be there, we needed to ride it out with her.”

‘There are a lot of questions about, what’s going to happen next? Where am I going next? … We don’t have those answers, but we can certainly sit and listen’

Ms. Douglas passed away on April 23, 2013, one day shy of her 64th birthday.
Early in her diagnosis, she told her husband that, “when life has meaning, all is worthwhile.” It helped her accept palliative care as the next, and final, step in her life, he said.

Yet research from B.C. suggests three-quarters of those who die are never identified as people who could benefit from end-of-life care.

Generally, patients require a life expectancy of three months or less to get referred. But for non-cancer diseases, such as advanced heart failure, dementia or chronic kidney disease, it’s difficult to predict when patients will actually die.

“So people with end-stage dementia or the very frail — they need bed lifts. They want to die at home. But there’s nothing out there [for them] if I can’t say with any certainty they’re going to die in three months,” says Dr. Ross Upshur, Canada Research Chair in primary care research.

“What happens is they get the runaround through the system and brutally treated. They get bounced through services, they get bounced in and out of hospitals and anybody who has an older parent that they’ve tried to get appropriate care for knows it,” Dr. Upshur says.

The Temmy Latner Centre for Palliative Care at Toronto’s Mount Sinai hospital provides round-the-clock, in-home care by doctors based not on life expectancy, but on need. Their palliative home care patients are less likely to be admitted to emergency in the last weeks of life, and less likely to die in hospital.

“We can do a lot for people at home, but they have to buy into a certain approach that they are opting not to have the high degree of intervention that can happen in a hospital,” says director Dr. Russell Goldman.

Dr. Chochinov believes good palliative care can address the fears driving support for euthanasia.

But others say there is some suffering even the best care cannot touch.

In a study published in September, researchers examined the frequency and intensity of symptoms in the last seven days of life among cancer patients who were able to communicate and who died in an acute palliative care unit. On a scale of “none” to the “worst possible,” patients scored symptoms such as pain, fatigue, nausea, depression and anxiety.

Despite intense care, some patients still suffered as they approached death.

For a small number of people, Dr. Upshur and others say, a better death will mean a doctor-assisted one.

Some say it is already happening in Canada.

Postmedia News

Tomorrow: Final exit — How Quebec patients and doctors are preparing for legalized “medical aid in dying.”

Years ago I saw an ad for a nothing teen movie with the sell line, “Remember when you were so young, you really thought you would live forever?” I thought it was sublime, and pitied the sad-sack copy writer who had to waste it on a direct-to-video project.

I do remember when I was that young. We all do. It’s a time when you live without real responsibilities or schedules. You make new friends effortlessly. You don’t even know where some of them came from. You live like the cast of Friends and The Big Bang Theory, just showing up at each other’s houses and flop cafés. You hang out. You find yourself eating French fries in a dive at three in the morning and landing last-minute invitations to cabins in the country. Meals and drinks appear out of nowhere. Someone always has their older brother’s car and you never run out of gas.

In my 20s, I was a member of an improv comedy troupe called On the Spot. We met at McGill University, doing shows in a pub on Thursday nights that drew a big crowd of people sitting on couches and the floor. We graduated to a downtown club called The Comedyworks, where we held down Tuesday and Wednesday nights and filled the middle slot on weekends. We made decent money, but mostly we laughed our asses off and hung out in the green room and in each other’s homes — dives in the Plateau furnished with Ikea cast-offs and milk crates.

We’re in touch the way friends from your 20s are in touch. We hear about weddings and births. We Facebook. Some of us visit when we can

We were a core of about a dozen, and over the years another dozen or so came and went. Today we are scattered all over the world. Several became successful actors, including one with a series on TV. Others stayed in comedy. Some of us retired because we figured we were out of funny. At least one became an astronaut. We’re in touch the way friends from your 20s are in touch. We hear about weddings and births. We Facebook. Some of us visit when we can.

This week we heard that the first of us had died.

ita Anderson (she spelled her name with a small i) wasn’t on stage. She and Molly were our “backroom.” They watched shows and took notes. They told us after the show what had worked and what had flopped and why. They pointed out where we had broken the rules of improv (oh there are rules), and if you heard them laugh from the shadows during the show, you knew you had said or done something genuinely funny.

ita was the daughter of a Jamaican diplomat and a scientist. She was one of those people you think has an accent but you can’t quite put your finger on it. Maybe it was because she pronounced both Ts in the word “little.” She was lithe, and she had one of the most beautiful faces I have ever known. One hand was smaller than the other, which she deftly obscured. She made up for her disability by becoming a fierce practitioner of martial arts including sword play. When her father finished his time in Canada she stayed with us and the comedy troupe. Eventually we all drifted away from The Comedyworks. ita moved to Los Angeles to pursue her career in tech.

We laughed a lot and wondered how we could have slipped from those days in our 20s into our 40s with alarm clocks, budget meetings, mortgages, aging parents and kids

The last time I saw ita was in a swank restaurant in LA, the kind of place that served foie gras in cotton candy before we were all too guilty to eat foie gras. The meal lasted for hours, with guests coming and going as their schedule permitted. We laughed a lot and wondered how we could have slipped from those days in our 20s into our 40s with alarm clocks, budget meetings, mortgages, aging parents and kids.

ita was found dead in her apartment last week. We don’t know what happened. Her sister has come to take her home to Jamaica. The old circle of friends came together by phone, text and Internet.

We each have our time in this life and our arcs parallel and intercept others through chance, blood and choice. But there’s no going back to when we were so young we thought we would live forever.

I would write that I wish I could hear ita laugh again, but I still can. And for that and the time we had, I am grateful.

National Post

John Moore is host of the Moore in the Morning show on Newstalk 1010 radio in Toronto.

The patient was gravely ill, but a lengthy note by nurses at a Halifax hospital focused on the person’s next of kin. The relative, they complained, was making trouble, demanding aggressive treatment that seemed inappropriate — a source of frequent tension in Canadian health care.

Stephen Workman reviewed the chart, called the relative and passed on grim but straightforward news.

The patient was likely to die, and treatment such as cardio-pulmonary resuscitation [CPR] would offer little help, the internal-medicine specialist at QEII Health Sciences Centre recalls informing the family member.

“ ‘Oh, we were never told that,’ ” the person responded, the dispute suddenly ending. “ ‘That’s all right then.’ ”

The surprising encounter embodied an idea some physicians say could go a long way to lessening the conflict and discomfort that marks many Canadians’ deaths.

As controversy builds around euthanasia, funding for palliative care and the limits of life-extending technology, these doctors advocate a bit more plain speech.

Instead of tip-toeing around the question, be direct, they argue. Rather than telling someone their mother is “seriously ill,” why not explain gently that the woman is dying, asks Dr. Workman, on a mission to transform the language around end of life.

Being frank can make people more willing to consider palliative care in hopeless cases, or at least be more realistic about the benefits of further treatment – and motivate health professionals, the physician said.

“We like euphemisms for death,” he said. “Dying patients, they’re not dying, they’re ‘failing to respond,’ or ‘they’re doing badly.’ … [But] If you say ‘This patient may well be dying, and I’m going to be looking after them for what in all likelihood will be their last week or two of life,’ then I think you have to step up to the plate.’ ”

Care of people in their final months or days is an increasingly pressing — and controversial — issue, not least because of demographics. The number of Canadians dying yearly is projected to climb 40% in the next dozen years, their final 12 months accounting for as much as a quarter of health spending.

One study concluded that seven of 10 hospitalized elderly people wanted comfort care as opposed to life-prolonging treatment, yet most ended up in the intensive-care unit. Both the Health Quality Ontario agency and the province’s ombudsman called this week for more and better palliative care.

At the same time, hospitals and families have repeatedly clashed over the issue, relatives typically wanting all the stops pulled out, and doctors feeling that continued treatment is futile and harmful.

Some disagreements may be intractable, others a function of communications breakdowns, say ICU doctors who spoke to the National Post this week.

“I do think we’re afraid of failure sometimes in the medical profession, and so probably do use language that we think is just being a bit gentle, when it’s not what we believe,” said Chip Doig, head of critical-care medicine at the University of Calgary. “If we truly believe that something is not curable, what it requires is time, what it requires is care to have a meaningful discussion with the family.”

Part of the problem is that health care has its own “industry slang” whose meaning is clear to doctors and nurses, but much less so to patients, he said. Tension often revolves, for instance, around “do not resuscitate” orders instructing staff not to perform CPR and other emergency procedures on a patient if his or her heart stops.

It is not only a negative term – signifying medical neglect to some lay people — but often misunderstood, Dr. Doig said. That is why he talks to families about performing “chest compressions” after cardiac arrest, not CPR, and that doing so could break several ribs and cause acute pain.

Likewise, he said he does not just discuss whether to put patients on a ventilator to help them breathe, but explains that it means forcing a tube down their throat, which could lead to pneumonia and other harms.

Meanwhile, there is a nascent movement to replace the term “do not resuscitate” with “allow natural death.”

‘If we truly believe that something is not curable, what it requires is time, what it requires is care to have a meaningful discussion with the family’

Some doctors hide behind euphemisms because they’re afraid of upsetting families or simply unsure of the prognosis, echoed Randy Wax, a critical-care physician at Lakeridge Health in Oshawa, Ont. Yet telling people their kin might “pass away,” rather than die, for example, can be a recipe for confusion, he said.

Dr. Wax relates the story of one family member who thought their relative was dead, when a nurse had only meant to explain the person had “passed” a tooth they had earlier swallowed, using the word as a euphemism for another unmentionable human act.

He said he often starts difficult ICU conversations by asking family members what they know. Sometimes, they are aware that death might be imminent; other times, such news is completely unexpected, he said.

Medicine tends to focus on treating individual ailments and communicating those plans to families — but without painting the big picture and all that it means, Dr. Workman said.

A U.S. study published in 2012 found that 69% of lung-cancer patients and 81% of colorectal cancer patients surveyed were under the misconception the chemotherapy they had undergone months earlier would likely cure them.

Dr. Doig recalls a recent patient with metastatic cancer, already in palliative care, who was about to undergo surgery for a perforated bowel that had triggered septic shock. The family initially agreed to the operation, but the surgeon and emergency doctors had not explained the septic shock would probably kill the patient regardless.

“They said, ‘We thought from the surgeon it was fairly easy to fix the hole in the bowel and he’ll be in the ICU overnight.’ ”

Dr. Wax said he would like to see more education of the public about the true meaning and limits of the treatments offered by technology-laden hospitals.

Family physicians and specialists who treat patients for serious, chronic illness also need training on how to prepare patients for the inevitable end, he said.

Dr. Workman is doing his best. He published a journal paper advocating more forthright end-of-life language, and teaches medical students his sensitive but candid approach.

Being plain-spoken can be refreshing to patients, he said, citing the elderly man he encountered at QEII, his illness clearly advanced. The physician asked what he’d like to know about his disease. The patient said he wanted to learn “what’s what,” and the physician hesitatingly replied that the man was probably dying.

I knew that I was running the risk of stirring up the hornets’ nest when I agreed to an invitation from a major surgeons’ association to debate infanticide. The surgeons planned a “for-and-against-type ethics debate on a scenario involving a terminally ill newborn and euthanasia on parental request.

It was not a debate I was looking forward to. Ending the lives of catastrophically ill newborns is nothing anyone takes any pleasure from even contemplating. Thanks to ever better prenatal diagnosis the number of newborns whose parents have to confront such a devastating question continues to decrease. My task was to present what I thought would be the strongest possible ethical case in favour of respecting parental choices involving the active ending of such newborns lives.

The paper was online for a while, buried in a specialist thoracic surgery journal. When I got a call from Tom Blackwell, the National Post’s health reporter, last week, I knew that I would have to clear my schedule. And so it turned out to be the case. I ended up being invited for target practice by the CBC’s The Current program, where sandwiched between two anti-euthanasia palliative care practitioners, I was told I didn’t know what I was talking about. On Twitter you can find me these days under the hashtag #Nazi.

The Post‘s Andrew Coyne went all out in his column on Tuesday to explain why fears about a slippery slope if we decriminalized assisted dying are clearly justified, using my short journal article as a hook. His piece is riddled with so many factual mistakes that it is impossible to do it justice in just one go, but let me give you a few examples.

Coyne claims that I had suggested that newborns with “severe deformities” could — on parental request — be legitimately euthanized. The truth is, nowhere in my article did I mention severe deformity, not even by using a different phrase, as a reasonable decision-making criterion in such cases. Don’t take my word for it — I’m happy to share the article with any and all who ask.

In most jurisdictions that have decriminalized assisted dying, infanticide isn’t available. To the best of my knowledge only two jurisdictions permit the active termination of such newborns lives on parental request.

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Coyne claims that in societies that have decriminalized assisted dying infanticide is “increasingly the practice.” He needed to make that claim for his dire slippery slope warnings to go anywhere. Clearly Coyne didn’t take the time to read my article before writing his commentary. The vast majority of catastrophically ill newborns whose lives are ended in the Netherlands (one of the two jurisdictions where the practice is allowed) see their lives terminated by a combination of palliative care and withdrawal of life-sustaining treatment, not by euthanasia. This is also available to Canadian parents and is perfectly legal.

Futile high-tech surgery for terminally ill newborns isn’t on the menu in our country either. In the Netherlands these kinds of cases number today around 170, decreasing from about 300 in the mind 1990s. Euthanasia in such cases would simply reduce the length of time a newborn would have to struggle until he/she expires. Obviously, between active termination of its life and withdrawal of life-sustaining treatment, the outcome is the same — the death of the newborn. Coyne’s slippery slope argument rests on about 4 euthanasia cases between 1995 and 2005 and none between 2000 and 2010. Seems less like a slippery slope than a steep hill, since these numbers are not climbing.

Coyne is also incensed about assisted dying advocates drawing distinctions between “terminal illness and mere depression.” There are many ethically relevant differences between terminal illness, say late-stage cancer, and “mere depression.” For starters, one kills, the other one does not. I will let the description of “depression” as “mere depression” slip, anyone suffering from this condition will know how offensive and ignorant this choice of wording is.

Coyne’s apocalyptic journey ends where it must end, in good ole eugenics. Case closed. Did he provide any evidence for this claim, at least? Not quite. Alas, four cases don’t quite make eugenics.

I could go on, but the point is made. Whatever the rights and wrongs of infanticide, the issue is unsuitable to prove that legalized assisted dying would create a slippery slope.

National Post

Udo Schuklenk holds the Ontario Research Chair in Bioethics at Queen’s University.
Twitter.com/schuklenk

SIERRA LEONE — It was mid-afternoon when our World Vision team arrived in the outskirts of Moyamba, a town in southern Sierra Leone. We were guided to a small house, surrounded by at least 100 people. A woman named Betty had lived in this house. Here, she had shared food, love and laughter with her two sons and extensive network of family members. And here, Betty had suffered and died after contracting Ebola.

World Vision workers had come to carry Betty’s body to its final resting place. I had come to photograph all the correct steps, so as to help educate other communities on ways to safely handle the bodies of those who died from the disease, and provide a dignified burial.

James, Betty’s teenage son, stared at me, teary-eyed but with a hypnotic intensity. I couldn’t tell what he thought of my presence here, at his mother’s funeral. In a culture where physical contact is paramount, I couldn’t even touch James’ arm to show him that I cared. And despite my good intentions, I could see that the heavy camera I carried was threatening.

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Feeling like an intruder at such a painful time was almost more than I could bear. I joined the burial team as they began doing their work. I know them and they know me, and I needed the distance away from the stares and quiet hostility of the family. I filmed the team’s precise preparation for burial, including the disinfection of the body and everything it had touched. I admire the team’s commitment to doing such a dangerous but absolutely necessary job. But while the act of filming removed my feeling of inadequacy, I continued to avoid looking at the grieving people standing nearby.

From a distance, I watched one of the workers spraying chlorine throughout the main room of Betty’s house. The too-familiar stench and acidity of the disinfectant is everywhere these days. As I watched, I realized that even such extreme, careful measures would mean little or nothing for Betty’s family. The fear of Ebola is so great that no one will ever inhabit the house again.

In a courageous act of compassion, an older woman came forward and held the sister as she grieved

I continued to photograph as the brief memorial ceremony took place … click, click, click. A local pastor, who had arrived with the team, began praying for Betty. As the family joined in, the silence broke as tears began to flow from many of those present, including me. The Lord’s Prayer has never been more intense and more meaningful than at this particular instant.

Through my viewfinder, my vision was limited to the sorrow and the pain of the family members. Then suddenly, I heard something. Betty’s youngest sister screamed and ran towards the body, calling out “Sister, my sister!” over and over again. Her face a mask of unbearable grief, she fell to the ground, clawing at the soil. My own tears flowed freely now. In a courageous act of compassion, an older woman came forward and held the sister as she grieved. At a time when all physical contact is discouraged, she gently helped lead Betty’s sister away from the body. Her cries continued “Sister, my sister!” for what seemed like an eternity.

The burial workers slowly carried the body to a pick-up truck, which transported it to a nearby burial ground. Betty was laid to rest among the others from the local community who had died from Ebola. She received the prayers and the dignity she deserved. It is all we can offer to the dead. In the meantime, we’ll continue our efforts, along with governments and countless other agencies, to help those still living in the shadow of Ebola.

National Post

Bruno Col is regional communications manager, West Africa, for World Vision International.

Rushing toward the future, opening new horizons of knowledge at every turn, modern medicine has delivered not only uncounted benefits to the world but also a grave and intractable problem: Often doctors save a life but leave a patient to endure months or years of suffering. Trying to do good, doctors may do harm.

This is the main burden of Being Mortal: Medicine and What Matters in the End (Doubleday Canada), by Atul Gawande, perhaps the best current writer on medicine.

I read it with keen interest, partly because Gawande sets his views in a well-made, anecdote-crammed narrative. Also, I’m 82, still working, still active and “still vertical” (as an old colleague always says of himself). Even so, any octogenarian knows that the future is shrinking and what happens at the end deserves thought.

Gawande is a 48-year-old Harvard cancer surgeon with a strong conscience and a relentless curiosity. He writes on mortality with passion and personal involvement.

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He believes medicine still has no idea how to deal with the dire complications that knowledge has created: Doctors who don't know when to stop intervening and patients who don't know when to tell them to stop. The doctors are on automatic pilot. The patients are "deluded by a fantasy of what medical science can achieve." So medicine has "reached the point of actively inflicting pain on patients."

The resulting calamities have built support for legalizing doctor-assisted suicide. If your mother has endured a painful life-saving operation only to discover that there's nothing ahead but helplessness and misery, you may think positively about a change in the law. Quebec passed a right-to-die law last summer and the idea seems to be gathering momentum among patients and doctors elsewhere. Gawande doesn't discuss suicide, but his book provides rich background for anyone pursuing the argument.

I have a living will that says I don't want to be resuscitated, intubated, ventilated, fed by tube or fed intravenously. Still, nothing is predictable. Fall on the street alone, bang your head, get whisked to the hospital (without, of course, a living will on your person) and you may undergo an emergency operation that leaves you with half a brain, not enough to say "Stop."

On a happier note, Gawande describes the excellence of many hospice organizations and welcomes the reform movement in nursing homes.

The residents were drawn out of themselves. Most of them perked up

He has a delightful anecdote about the Chase Memorial Nursing Home in New Berlin, N.Y., where they abolished what they defined as the three common plagues of such places (boredom, loneliness and helplessness) by breaking all the rules. They acquired two dogs, four cats and 100 parakeets, they encouraged staff members to bring their kids after school and they set up a garden for the residents and a playground for children. The residents were drawn out of themselves. Most of them perked up. The number of prescription drugs they required fell sharply, particularly psychotropic drugs.

Being Mortal describes three deaths in Gawande’s family. His grandfather, a successful farmer in India, lived to nearly 110 and was cared for in his last years by his family. There were arguments with his heirs but until near the end he had the autonomous control of his life that most people desire. On the other hand, Gawande’s grandmother-in-law, a vigorous and confident New Englander, was trapped by her family’s demands that she live a safe life. She lost the right to manage her money or drive. And everyone agreed it wasn’t safe for her to live alone. She moved into a nursing home designed for managerial efficiency and risk aversion. Autonomy and self-respect for the patients was on nobody’s agenda. “She felt incarcerated,” Gawande tells us, “like she was in a prison for being old.” And that was where she died.

The third death is that of Gawande’s father. A surgeon in Athens, Ohio, he was still operating in his seventies when he developed a malignant tumour on his spinal cord. He becomes the core of the book and especially its poetic, moving conclusion. While dying he kept working on his great project, a school he founded in India. He and his family negotiated his death together, with expert help from a hospice program. He controlled as much as possible of his final days. Of course it was not perfect, but as his son tells us, “No one ever really has control.” The assisted-suicide movement offers to put a substantial measure of control back in the hands of the patient.

I lost both my mother and my dog this year. One of them had a good death.

I held my dog as he was put to sleep to end his suffering from cancerous tumours in his lungs and digestive system. He was gone in moments. It broke my heart, but I knew he had been struggling as no living thing should.

My mother also was being consumed by cancer when nature conspired to impose on her the greater burden of a devastating stroke. But the grief was only just beginning. For a week, she lay in a bed in a shared room with a man who talked endlessly on his cell phone selling second-hand tires and running flop houses. Down the hall, another stroke victim keened like an inmate at Bedlam while still another banged relentlessly with a spoon on the metal bars of her bed.

Every few hours, someone would come in and shout my mother’s maiden name, one she hadn’t answered to in 60 years. Some would rub a knuckle up and down her sternum to assess her consciousness.

After that first heart-crushing week (for the family — we don’t know how mom processed it all because she was unable to communicate), she was transferred to a palliative bed. I don’t believe in the divine but I would call the nurses and orderlies angels anyway. They did what they could to give grace and dignity to my mother in her final days, but they could do nothing medically productive except wait for nature to take its course.

A natural end for many Canadians is to starve to death. It typically takes two to three weeks. Within days of my mother’s arrival at the hospital, a neighbor and former church-mate also was admitted. She was suffering no immediate health crisis but she decided she was done with living and stopped eating. It’s instructive to note that she was a celebrated physician.

I don’t know if either woman would have chosen to end their lives a few days earlier. But were the means available, maybe the discussion would have taken place. And had they opted to slip away with a needle or a drug cocktail, would it really be an unbearable affront to our society or the constitution?

As Canada’s Supreme Court grapples with the many issues surrounding physician-assisted suicide (PAS), I have been reviewing the reasoning of those who oppose it. Their arguments inevitably boil down to the notion of the “slippery slope,” or the fact that PAS is personally offensive to their morals.

Where the slippery slope is concerned, it’s not inconsequential that many of the same conservatives who oppose PAS invoked the same augment against same-sex marriage; and yet, a decade later, a man has yet to marry a dog.

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Assisted-suicide opponents will marshal a shopping list of anecdotes from Europe that horrify at first blush, but that usually turn out to be devious exaggerations. Often, they are cases where the medical practitioner actually has ended up being prosecuted for malpractice — i.e., crimes, not legislated policy.

Context makes other cases much less worthy of outrage. Yes, it’s jarring to think of children ending their lives. Less so when you find out that the patient is an all too cancer-savvy teenager whose painful 10-year battle is days or hours from its inevitable conclusion.

In the end, the manner of one’s exit is a matter of individual freedom. I find it noxious that I should yield to the moral objections of others. Faith and philosophy may be wonderful guidelines as to how one might live a better life, but I refuse absolutely that they be edicts as to how one must live and die.

I have great respect for the beautiful minds of McGill University bioethicist Margaret Sommerville and Father Raymond de Souza, but quite frankly their essays on why I should not be permitted to end my life on my terms (or marry whom I wish) amount to a kind of intellectual dandyism. I don’t much care if an early exit poses pointy-headed questions about the aggregate value of life or the wording of the 1982 Constitution Act. I’ll go my own way thanks.

If a person wants to end their life with the help of a willing medical practitioner, it’s no-one else’s business but their own. I may choose to rage against the dying of the light but if I opt to glide away on a cloud of morphine I don’t really care what some moral scold thinks about it.

Doctors at a major Toronto hospital violated the law by unilaterally imposing a do-not-resuscitate order on an elderly patient against his family’s wishes, an appeal board has ruled in an extraordinary clash over end-of-life care.

Douglas DeGuerre died from cardiac arrest at Sunnybrook Health Sciences Centre as his daughter, Joy Wawrzyniak, frantically tried to convince medical staff to save him, and health workers declined to help the severely ill war veteran.

In a case that dramatizes the debate over who has ultimate power in such cases – doctors or patients’ families — Ms. Wawrzyniak said she had only just learned that the “full code” response to emergencies she had requested on her father’s behalf had been over-ruled by a do-not-resuscitate (DNR) order, which meant CPR would not be attempted during cardiac arrest.

Ms. Wawrzyniak, a nurse, said Wednesday that Mr. DeGuerre, 88, was struggling to breath when she entered his room the day he died in 2008.

“My father said to me, ‘I’m drowning, I’m drowning.’ Those were his last words,” she recalled. “I grabbed the oxygen bag, and I tried to help my father while they all stood there and did nothing … I just couldn’t believe it.”

Ontario’s medical regulator has twice rejected Ms. Wawrzyniak’s complaint against the doctors, saying they acted properly. For the second time, however, the Health Professions Appeal and Review Board has rejected that decision as unreasonable, a rare event for a tribunal that upholds most of the College of Physicians and Surgeons’ decisions.

The board directed the province’s medical regulator to re-open disciplinary proceedings against the physicians, bring its own policy in line with the legislation, and make sure hospitals understand their legal obligations.

“Although the circumstances in this case are exceptional, the misconduct alleged is serious,” the board said in its recent ruling.

“The importance of this complaint transcends the conduct of the [doctors]. It is incumbent on the College to ensure that doctors understand their legal obligations … The public must have confidence that [consent laws] are understood and respected.”

A lawyer for the physicians involved — Martin Chapman and Donald Livingstone — said he could not comment on the case while it is still before the College, as did their hospital.

“Sunnybrook is following this case with interest,” said Craig DuHamel, a spokesman for the institution. The College also said it was unable to comment.

The regulator’s complaints committee had earlier ruled, though, that the doctors acted with good judgment, convinced that life-preserving measures would be futile and only exacerbate Mr. DeGuerre’s suffering. He had congestive heart failure, diabetes, hypertension and COPD, among other conditions, and had undergone a double leg amputation just before his death.

The bitter, drawn-out dispute — also the subject of a lawsuit — is one of numerous disagreements over treatment near the end of life that have wound up in Canadian courts and tribunals in recent years.

The issue typically boils down to who has the final say when medical staff feel treatment should be halted — and families want everything possible done to keep their loved one alive. The question was partly answered by the Supreme Court of Canada last year in the case of Hassan Rasouli, by coincidence another patient at Sunnybrook.

It said the hospital could not remove him from a respirator without the consent of the family and, if the parties disagreed, the matter should be resolved by the province’s Consent and Capacity Board.

‘I grabbed the oxygen bag, and I tried to help my father while they all stood there and did nothing … I just couldn’t believe it’

Mr. DeGuerre’s family had originally consented to a DNR directive, but requested “full code” after his amputation, a change noted repeatedly on his chart.

“He wanted the surgery because he wanted to live,” Ms. Wawrzyniak said Wednesday. “My father was a fighter. There were lots of things in life he was still enjoying.”

Dr. Chapman, with Dr. Livingstone’s agreement, later changed the chart to instruct staff “do not attempt resuscitation in event of cardiac arrest,” saying doing so would only increase the patient’s suffering. No one told the daughter what had happened, but physicians were not obliged under the Sunnybrook policy to obtain consent for DNRs.

Ontario’s Health Care Consent Act, however, does require doctors to get agreement from “substitute decision makers” like Ms. Wawrzyniak, and ask the Consent and Capacity Board to resolve disputes, the appeal body said.

The College’s own rules must be brought in line with the Act and communicated to hospitals so “they can review and revise their policies as required,” the board said.

A Calgary hospital has decided to allow families to be present during resuscitation attempts, amid growing evidence that relatives benefit by being allowed to witness what may be the last moments of their loved one’s life — and concerns of the conflicts that could inevitably rise.

The new South Health Campus of Alberta Health Services has developed guidelines and is increasing the number of staff trained to take on a “family liaison” role at a moment’s notice, “so that whenever a code is called or whenever a patient gets into a trouble and is going through a resuscitation, the family can remain present,” said Joanne Ganton, manager of patient and family-centred care.

“The role of a family liaison is to assess the family — do they want the option? Some families may say, ‘No, get me out of here.’ Others may say, ‘Yes, I want to stay,’ ” Ms. Ganton said.

Children’s hospitals have long allowed parents to be present during resuscitation attempts, and numerous organizations, including the American Heart Association and the Canadian Association of Critical Care Nurses support giving all families the option. Shutting families out of the room denies them a chance “to face death with a loved one,” the nurses group says, and to say goodbye.

Many hospitals have begun informally including families in resuscitations on a case-by-case basis. “What we did here was put it into writing that this is something that we’re going to try to do as often as we can,” said Colin Del Castilho, an emergency physician at Calgary’s South Health Campus.

“You’re there so patients can feel your presence, your voice, your touch,” added Ms. Ganton, who will be presenting her hospital’s experience with family witnessed resuscitation at the 6th International Conference on Patient- and Family-Centre Care in Vancouver Thursday.

“Families are provided with constant information so they know what’s going on at all times.”

But some experts in critical care worry real-world resuscitations may be too graphic for families, or that hysterical or panic-stricken relatives will try to interfere or demand the medical team keeps going when any hope for survival is gone.

CPR performed in a hospital isn’t like the sanitized versions depicted on television. Chest compressions have to be deep, rapid and forceful. “You will almost invariably break ribs,” said James Downar, a critical care and palliative care doctor at Toronto General Hospital. Inserting a central line — a catheter to deliver medications and fluids — into a major vein in the neck or groin can cause visible bleeding, he said. If the patient is in cardiac arrest because of a major injury there may be more blood.

Dr. Downar said it can be vital to have families present in emergency cases where the patient is suddenly rushed to hospital “and you’re literally asking the family members questions while you’re preforming CPR, while you’re administering shocks.”

But he has also witnessed resuscitations when family members pleaded with the team not to stop, even when the patient had, in fact, died. “And they ultimately ended up continuing with the resuscitation because they were concerned what the family might do if they didn’t.”

Dr. Christian Vaillancourt, an associate professor in the department of emergency medicine at the University of Ottawa, said papers have been published on family witnessed resuscitation “for at least a couple of decades.”

All or most are “overwhelmingly in favour of allowing this to happen, except perhaps during particularly invasive trauma care,” for example, a thoracotomy, where the chest is cut and the ribs pried open to gain access to the heart and lungs.

Postmedia News

]]>http://news.nationalpost.com/news/canada/calgary-hospital-to-allow-families-to-face-death-with-a-loved-one-and-witness-resuscitation-attempts/feed/1stdeSIMAllen Scantland: Don’t ever believe that death is painless. That is a fairy talehttp://news.nationalpost.com/full-comment/allen-scantland-dont-ever-believe-that-death-is-painless-that-is-a-fairy-tale
http://news.nationalpost.com/full-comment/allen-scantland-dont-ever-believe-that-death-is-painless-that-is-a-fairy-tale#commentsFri, 04 Jul 2014 10:00:39 +0000http://fullcomment.nationalpost.com/?p=157722

Recently, several National Post columnists have written about pain, in the context of the ongoing debate about euthanasia. Unfortunately, I have developed some knowledge of this issue during my life.

My father suffered with later stages of multiple myeloma, a blood cancer that degenerates the bones until they can break by just putting weight on them. More on him below.

His father — my grandfather — had the same cancer. He chose to die at home, with no nurse or doctor, but his children around to care for him. Just the weight of his body lying in bed was excruciating, and produced much incoherent moaning. He had a sizeable bottle of some liquid oral opiate prescribed, likely a morphine. But when you die, there is a point when you can’t even swallow, and liquids choke you, so it was of no use. He rolled over or was rolled over to change his soiled bedding and he broke his collarbone. I don’t think anyone knew it at the time. It only added to his agony.

It makes me weep writing about this, as I was only a young teen at the time and had no say in his care or the manner of his dying. I could only watch. It took days before his hollowed out corpse died. I don’t think it made any family member stronger or closer, and I certainly will never allow that happen to me.

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My wife’s grandfather, a large and tall man with huge hands, had colon cancer that was treated. But when it came back, he refused to have chemotherapy. He eventually succumbed to his cancer. But in contrast to my own grandfather, he was at a medical facility. I barely recognized him lying unconscious in his bed, shrivelled bones rasping in his bed. I walked in as the nurse gave him one more injection of morphine, and in that instant he gave one last heavy breath and died.

The men took two different paths. Dying on your own can take a long and agonizing time, or you can choose a hospice setting and someone will kill you quietly.

In my father’s case, he had been in pain for about six months before finally being diagnosed with his multiple myeloma. He kept telling the doctors in the emergency room that he must have hurt his shoulder golfing, so they prescribed painkillers and anti-inflammatories. This went on for weeks prior to his diagnosis. Colleagues saw his sunken, sleepless eyes and worried. When he passed out at work, they brought him to the ER yet again.

Morphine was making him extremely nauseous and he couldn’t eat or drink, so we demanded that they use another pain medicine

He had gone several times to the hospital to complain about the pain, and I suspect they must have thought he was an addict. This time, though, he refused to be discharged until he was diagnosed correctly, so he waited several hours in a hall until the night doctor came on duty. This doctor was more compassionate and chose to admit him. Blood tests confirmed a significant amount of protein in his blood, an indicator of cancer. Within two months, he lost 60 lbs. and looked very much like his father before him. Morphine was making him extremely nauseous and he couldn’t eat or drink, so we demanded that they use another pain medicine.

Most of the family think this was a choice between cheap morphine and more expensive drugs, and we don’t know why it took us demanding the change in medicine before they acted on it. We all believed he would have died if not for that change. He responded well to the chemotherapy and was released to live the few years he had left. He gained some of his weight but was prone to illness. He broke his sternum from coughing and lived with a broken chest for the two years before he died. His last three years of life were mostly alone except for visits and phone calls from family. His friends would drive him to buy groceries and take him to his appointments. The protein in his blood destroyed his kidneys so he was relegated to dialysis twice a week, and he would lose several pounds of fluid every visit.

He was always exhausted after dialysis and would rest for the remainder of the day. Otherwise, he was alone to his own devices, playing computer games to distract him from the constant pain. He grew accustomed to dying. Some days the pain was so severe he could not get out of his bed, so he kept a jug to relieve himself. He had a do-not-resuscitate order put in place and it was clearly understood by all. Eventually, he died of a blood clot to his lung.

In his last years, he diminished as a person. He seemed smaller, more aloof. He seemed to accept his imminent death. He didn’t want us weeping at his bedside, but sought a quiet transition/transformation unto death. He was admitted to hospital on the night he died, and was provided narcotics to alleviate the extreme pain. We were told that morning that he passed away in the early hours. (My younger brother was informed by the duty nurse of his passing — but he misunderstood “expirer” in French to mean that he had trouble breathing. When I called him to explain that he died, he was in the cab to the hospital, to go see how dad was doing.)

You’re left a husk of a person, sunken and shrivelled

There are no easy answers to dying, no easy ways for you and your loved ones to accept death. What I know, though, is that dying alone, or with company, in bed or anywhere without narcotics likely will be painful, maybe extremely painful and laborious, lasting days. Don’t ever believe that death is painless. That is a fairy tale.

Doctors and nurses give the narcotic dose that slowly steals whatever strength you have until you just stop breathing. You’re left a husk of a person, sunken and shrivelled.

If people choose to die at the time of their choosing, I cannot disagree with their personal choice. I thought Hunter S. Thompson was selfish for killing himself. But I don’t know who he was as a person or what he was living. It is easy to judge someone from a distance, a little harder when you meet them.

There was a story of a woman in Brussells that I found insidious and cruel. This tormented soul with hateful parents chose to become a man so they would love him, only to realize that they would never love him and that his botched reassignment surgery would make him a non-sexual identity. He killed himself through euthanasia. I could never fault him, but the bastards that led him down that path deserve scorn, for a child unloved and a doctors’ erroneous diagnosis and surgery. He was mentally ill at worst, unloved at best.

Quebec, which now has Canada’s only euthanasia law, has at times been progressive and thoughtful in dealing with serious issues. This legislation eventually will be normalized across Canada, because people will ask for it, hospitals won’t be able to resist the demand, hospices are not a widely accepted option, and people want the same choice in death as they have had in life.

National Post

Allen Scantland lives in Metcalfe, Ontario. allen.scantland@gmail.com

]]>http://news.nationalpost.com/full-comment/allen-scantland-dont-ever-believe-that-death-is-painless-that-is-a-fairy-tale/feed/0stdv.jpgJane Macdougall: On abrupt endings and things you think about when a friend takes her lifehttp://news.nationalpost.com/life/jane-macdougall-on-abrupt-endings-and-things-you-think-about-when-a-friend-takes-her-life
http://news.nationalpost.com/life/jane-macdougall-on-abrupt-endings-and-things-you-think-about-when-a-friend-takes-her-life#commentsSat, 03 May 2014 13:45:52 +0000http://life.nationalpost.com/?p=136875

Hey George! How are you? Keeping busy?

In the moment that escapes my lips, I give myself a mental lashing for my lousy word choice. It’s no wonder I’m not in the diplomatic corps!

George Walkey is my neighbour. He’s also an undertaker. Undertaker, however, is an antiquated term. Funeral director is the preferred appellation today.

Come the fine weather, I frequently encounter George in the alleyway between our houses.

He’s the antithesis of the undertaker of vintage cinema. Whereas that stereotype is dour and spectral, George is pink-cheeked, with a sunny disposition. He drives a sedate black town car — it figures — but the other car in his garage is a vintage red Deux Chevaux convertible. There’s nothing Addams Family about the guy.

I met George when I moved into the neighbourhood. I gave him a quick tour of my new house and explained what I was going to do with the teak panelling.

Ahh, that’s not teak, I remember him saying. That’s mahogany.

Really?! Mahogany? How can you tell?

Oh, I know wood, he replied. I’m an undertaker.

And he was right: It was mahogany.

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On this bright spring morning, our talk turns to suicide. Recently, a friend had taken her life. She had done so with the efficiency for which she was so admired. Her descent into depression was baffling; swift and baffling. If ever there was a person who personified a ray of sunshine, she was it. Just the same, depression arrived, fully loaded, on her doorstep in autumn and by spring it had taken its toll. Less than half a year. I’ve known fatal cancer diagnoses to get a longer window of time.

There is no good purpose for suicide, just as there is no culpability. It’s human nature to look for cause and effect, just the same. The deadly impulse can be a resolute thing, unyielding to any and all intervention; that’s what makes suicide so formidable. It’s the worst sort of disease as it can defy the most concerted efforts to restore a person to who they really are. Perhaps the most disturbing aspect is that it can strike anyone. And it does: a metastatic melancholia that can kill.

I was in university when a friend got up from an argument at the family dinner table, went downstairs, and took a rifle out from the gun cabinet. He did the unthinkable, right then and there. I remember — and here’s the great cliché — the surreal nature of the news. It didn’t seem possible. Untimely death never seems possible, be it accidental or self-inflicted. The term “self-inflicted,’ ” however, is such a misnomer. The instinct for self-preservation is profound. It’s something other than the self that does the harm.

The thing that lingered after my university friend’s shotgun death, however, was that if he could do this, then perhaps we all harbour the seed of personal destruction within us. I believe we do. The vagaries of neurobiology hold the key.

In the days since my friend’s death, conversation has revolved around the sniper-like quality of suicide. A friend tells the tale of her boyfriend’s fiercely purposeful suicide. George mentions a relative who took her life at 16. During a toast at birthday celebration the day before this recent funeral, a friend not present by virtue of suicide, is mentioned. Upon grim reflection, suicide is far more prevalent than first considered.

George tells me that he doesn’t holiday in the months of December and January. That’s his busiest time. He cites no science when he speaks of this, just that — anecdotally — deaths in general, and suicides in particular, spike in those months. The only explanation he can offer is conjecture: holiday celebrations that proved to underscore a lack of connection, rather than a sense of connection, or the daunting challenge of the new year.

Suicide, although still shrouded in darkness, isn’t the stigma it once was. Whereas many faiths prohibited burial on consecrated ground, these rules have been relaxed as a deeper understanding of the impulse has emerged. Most religions condemned suicide for a host of reasons, involving everything from improper stewardship of the gift of life, to a proscription on the violence implicit in suicide; from unacceptable karmic consequences, to a violation of the Sixth Commandment.

When a life ends abruptly, we find ourselves forced to contemplate the suddenness of things and the many things we ought to be grateful for. When a life ends by one’s own hand, we find ourselves forced to contemplate our lives in their interconnectedness.

I love billboards outside of churches. I love the drive-by catechism of spiritual sloganeering. This past week, I researched a maxim that has stayed with me for years now. It has been ascribed to Plato, and to Philo of Alexandria. Turns out it’s a relatively recent pronouncement by a Scottish Reverend, John Watson, a.k.a. Ian McLaren. It’s worth remembering.

Be kind: Everyone you meet is fighting a hard battle.

I asked George Walkey what 32 years of administering to the bereaved had taught him. He said: Never put off anything. Especially a kind word. And with that, he took his darling red convertible for a spin.

The scene plays out in autopsy rooms around the world, not to mention on any number of TV crime dramas: a scalpel-wielding pathologist calmly dissects a lifeless body for clues to an untimely death.

The chest and abdominal cavities are pried open, organs removed and the brain eased out through a sawn-off skull in a medical tradition as ancient as the Pharaohs.

It is a tradition, though, facing very modern competition. Led partly by a prominent Canadian pathologist, some specialists are pushing to augment, or on occasion even replace, those conventional post mortems with “virtual autopsies” that use CT and MRI scans to probe bloodlessly inside cadavers.

Ontario recently became the first jurisdiction in Canada to begin using imaging machines designed to diagnose the living as a tool to uncover the medical secrets of the dead.

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Among the potential benefits: improved efficiency, discovery of evidence that can be overlooked in the “classical” approach, and less trauma for families who object to their loved ones’ remains being dismantled.

It also creates an electronic record that some experts believe could avoid the kind of skewed judgement by a single doctor that resulted in Ontario’s child-homicide investigation scandal, in which serious mistakes by Dr. Charles Smith helped bring about wrongful convictions in several child deaths.

“We obviously can’t take jurors into the autopsy room and demonstrate findings, but in this way we can create three-dimensional images to demonstrate them,” said Dr. Michael Pollanen, the province’s chief forensic pathologist.

“You have somebody who has been shot several times, and we can scan them now and we can reconstruct the bullet-wound path in three dimensions … That will allow the jurors to create an integrated mental image of how this happened.”

‘The classical approach is that you are opening the body and writing down the findings. That transfer from what you see to what you write down is the biggest source of mistakes’

The concept could help non-forensic medicine, too, he said, by reversing a steady decline in the number of “clinical” autopsies carried out in hospitals, which can offer valuable insight into how diseases — or medical error — kill.

In a recent journal article, Dr. Pollanen called for an international trial to compare virtual and conventional autopsy results, and wider adoption of the new concept based on the results.

Some of his colleagues, though, are warning against too quickly abandoning traditional post mortems.

A physical autopsy but not a virtual one, for instance, could detect hardening of the cardiac arteries in a young gunshot victim, said Dr. Greg Davis, a forensic pathologist with the University of Kentucky. Even if the clogged arteries did not cause death, they would suggest a genetic propensity to heart disease, crucial intelligence for surviving relatives who might have the same predisposition, he said.

“What I worry about is doctors who sort of knee-jerk use their [scanning] tool and don’t even think about it,” said Dr. Davis. “I don’t ever want us to throw out the baby with the bathwater.”

Institute of Forensic Medicine, University of ZurichSurface and internal images taken as part of a virtual autopsy of a mountain-climbing accident victim in Switzerland. Click to enlarge.

The idea of using high-tech diagnostic scanners to peer inside the dead was pioneered by a forensic-pathology institute at the University of Zurich.

CT scans — which in seconds capture hundreds of X-ray views of the body and store them in a computer — are the workhorse of the virtual post mortems done there and elsewhere. Bombarding the corpse with levels of radiation that would never be used on a live patient, they generate “stunningly accurate renditions,” said Dr. Davis.

The Zurich group under Dr. Michael Thali has fused together a number of different imaging “modalities” into a system they call the “virtopsy.” A 3-D surface scan creates an image of the outside of the body; a CT scan details bones especially well and an MRI the soft tissues. The Swiss institute sometimes melds the images into one, three-dimensional picture.

The latest addition to its system is an automatic biopsy robot that, guided by the imaging equipment, can remove a tissue sample for examination under the microscope.

Even Dr. Thali does not suggest the digital method totally replace classical autopsies, but said it can add valuable information, sometimes identifying bone fractures that would have been otherwise missed, or more easily detecting air in the heart or brain, a possible killer.

Conventional post-mortems are for now still performed in Zurich on each body assigned to the institute by the courts. But the CT scan, also carried out on every corpse, is used as a guide to focus the physical dissection.

“We can scroll through the images and we see ‘OK, there is no bleeding in the brain, there are no signs of heart infarction …’ and that gives us a triage function,” he said.

Dr. Thali supports Dr. Pollanen’s call for a rigorous trial to assess the technology, but said his own research suggests the virtopsy captures most of what’s found by a traditional post mortem.

Another benefit of the virtopsy is that it preserves an indelible document of the inside of the dead person — whether a victim of foul play or not — that can be equally assessed by other experts, said Dr. Thali.

“The classical approach in forensics is that you are opening the body and you are writing down the findings,” he said. “That transfer from what you see to what you write down is I think the biggest source of mistakes … Having a scan of the body, you have the body in 3-D, and you cannot manipulate the findings.”

Dr. Pollanen said he wants practice to be guided ultimately by the results of his proposed clinical trial, but believes the conventional autopsy will always have a place, greatly enriched by the new tools.

“It’s going to be a combination of plain x-rays, CT scanning with 3-D reconstruction of the skeletal images, MRI scanning and conventional dissection of the body,” he noted. “That’s a huge amount of scientific power being brought to bear on the question.”

National Post

]]>http://news.nationalpost.com/news/canada/virtual-autopsies-using-ct-and-mri-scans-joining-traditional-dissection-methods-for-post-mortems/feed/3stdautopsy-1Institute of Forensic Medicine, University of ZurichJohn Moore: The dead in the yardhttp://news.nationalpost.com/full-comment/john-moore-the-dead-in-the-yard
http://news.nationalpost.com/full-comment/john-moore-the-dead-in-the-yard#commentsWed, 30 Oct 2013 04:01:16 +0000http://fullcomment.nationalpost.com/?p=134166

Saturday’s National Post was all about death. How fitting I should read it in my favourite chair overlooking the 29,000 dead people behind my house. I live on the edge of one of Toronto’s secret gems; St Michael’s Cemetery. It’s hidden away behind a perimeter of commercial and residential buildings walled off entirely from midtown Toronto save for an alleyway that leads to a set of gates. Sadly, with the exception of about a half dozen days of the year, those gates are padlocked.

But I’m one of the lucky ones. About three dozen century old properties enjoy access through back gates. For us, St. Mikes is like Manhattan’s fabled Gramercy Park, a private paradise for which keys belong only to those who live on it.

My history with St. Mike’s stems back to before I lived in Toronto. When I came to the city on business trips to my radio headquarters in the 1990s, the gates were open. I would sometimes grab a bite underneath a tree watching the power walkers rounding a natural oval on the grounds. I would stop to tease stories out of the grave markers.

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My fascination with cemeteries reaches back to when I was a child. My parents would pull over the car next to burial grounds in Kitchener and Godderich to search for the names of our ancestors. I came to appreciate that every stone tells a story; a brother lost in war, a mother dead in childbirth, the toddler who followed her to the grave, the husband who remarried, the second wife who buried him.

St. Michael’s story is the tale of 19th century Toronto. Good penitent Catholics, some famous, others who toiled and died in anonymity back when this graveyard was so far from the city core that families often did not accompany them on their final journey. There are nuns and priests from multiple orders. A dozen sisters lie just behind my garden fence. In the spring I straighten their crosses, knocked askance by the frost heaves. Where nuns lay in great rows you can chart the ebb and flow of the city’s epidemics by the acceleration of the death dates on the plaques.

Ambrose Small’s widow lies here, even as the final resting place of her husband remains a mystery after he vanished from the streets of Toronto in 1919

And there are the famous. Ned Hanlan’s rowing partner Michael O’Connor, felled by disease at 30. Mary Pickford’s grandparents are here alongside Papes and O’Keefes. Mathew Sheedy has lain in St. Mike’s since he was killed with a pitchfork in a St. Patrick’s Day riot in 1858, back when the city’s immigrant “problem” was the Irish. The grave of Henry Hughes notes he died just two days after Christmas in 1847 from “a fall from St. Michael’s Cathedral.” Ambrose Small’s widow lies here as well, even as the final resting place of her husband remains a mystery after he vanished from the streets of Toronto in 1919.

St. Michael’s is no longer subject to the comings and goings of grave diggers, hearses and mourners. There are perhaps two dozen graves to be found with dates after the Second World War. The most recent interment was a man who used to tend to the graves of his parents and who joined them there in 2011.

The cemetery is a solemn place, both because of the many dead but also because the hustle and bustle of the midtown is walled off. My favourite journey on Earth is down a grand avenue of tall 80-year-old maples leading to the winter vault where bodies were stored until the spring thaw.

There’s a growing movement in modern cemeteries to make them a place not just for eternal rest but also for the living

It’s a powerful thing to live amidst the totems of death and the dead themselves. These are the people who came before us. They had their time to make what they could of life. The sun has risen and set on some more than 50,000 times since their passing. Their loss was keenly felt in their day but today they are absent from anyone’s thoughts save for those fortunate few who still walk the sacred ground behind the padlocked fence.

There’s a growing movement in modern cemeteries to make them a place not just for eternal rest but also for the living. Concerts and picnics are held, dogs permitted and children welcome. I hope to one day see see St. Michael’s thrum again with the sounds of life.

Halloween, at least in part, originally was a ceremony for the dead, and in the Christian context an interval to honour or pray for those who had died but were still parked, so to speak, in Purgatory, awaiting their eventual ascent to heaven. It was, and still is, underneath the costumery and fun, a time to think of the dead.

Death may be the only taboo left in the modern world. We cosmetize to delay its inevitable advent. Botox and surgery are our apotropaic — our effort to ward off carnal dissolution. But other eras were not so skittish about death.

Connoisseurs of death can do no better than to read and read again the great 17th-century rhapsody of Sir Thomas Browne, known as Urne-Burial or Discourse of the Sepulchral Urns lately found in Norfolk. It is a soaring meditation on how humans have sought to cheat oblivion, to secure themselves against time, by the manner and scale of their memorials. The Pyramids of Egypt are the most monumental. And every common headstone is but a poor man’s pyramid.

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Browne scoffs at all attempts: “But all was vanity, feeding the wind and folly. The Egyptian mummies, which Cambyses or time hath spared, avarice now consumeth. Mummy is become merchandise, Mizraim cures wounds and Pharoh is sold for balsams.” (By Browne’s time, the use of “mummy” as a drug was common, and there was a traffic in Egyptian mummies to Europe’s apothecaries.)

He mocks the Emperors who sought to have their names live forever: “There is no antidote against the opium of time … our fathers find their graves in our short memories … Generations pass while some trees stand, and old families last not three oaks.”

John Donne, a Church of England cleric whose works appeared in the early 17th century, was fascinated by the carnal sharing between the dominions of Eros (love) and Thanatos (death). Love’s urgency is seen as a flight from Death.

The grave’s a fine and private place / But none I think do there embrace

Perhaps the greatest funeral oration ever given was Donne’s commentary on the text of Psalms 68:20, “Unto God, the Lord, belong the issues of death.” It is an obsessive, morbid-seeming, up-close mediation on the physical decay attendant on death. And what is even more remarkable was that Donne rose from his own sickbed to preach it at Whitehall on the first Friday of Lent in 1630 — in essence, Donne preaching his own funeral sermon: “For this whole World is but a Universall Churchyard, but our common grave and the life and motion of the greatest persons in it, is but the shaking of buried bodies in their graves by an Earthquake. That which we call life is but Hebdomada mortium, a week of death…”

As if in preparation for that sermon, he placed himself in his coffin, wrapped in a winding sheet. Donne was a genius of the erotic in his early life, and a genius of dissolution and decay in his later. The phrase that everyone knows of Donne, unearthed for a title by Hemmingway, is “for whom the bell tolls.” That was, of course, a funeral bell.

In the 17th century, the grave and sex were verbally akin, the most common pun being “to die” signifying both the end of life and sexual climax. In Andrew Marvell’s famous “To His Coy Mistress,” the poet eerily woos the lady to “enjoy” while she can, for after death “then worms shall try / That long preserv’d virginity / And your quaint honour turn to dust / And into ashes all my lust / The grave’s a fine and private place / But none I think do there embrace.”

The tombstone as aphodisiac.

Georgia Nicols' horoscope for March 1, 2014<strong>Moon Alert</strong>
We have the "all clear" today to do business (whether $10 or $10 million) and make important decisions. The New Moon is in Pisces at 00:01 am EST.
<strong>Aries (March 21-April 19)</strong>
Aries is the sign associated with beginnings and fresh starts. Today's New Moon energy is the day to swing your gaze to the future and think about what you want for yourself in the coming year. A forward momentum is beginning. Can you feel it?
<strong>Taurus (April 20-May 20)</strong>
Today is the best day of the year to think about your goals. Specifically, think about how you can make your hopes and dreams for the future a reality. First off, you have to clearly define your hopes and dreams before you see what is doable.
<strong>Gemini (May 21-June 20)</strong>
This is the perfect day to think about your life direction. For starters, are you headed in the direction you want to go? Give thought to this today. Think about where you want to be five years from now. What do you have to do to start to head in that direction? Gotta plan, Stan?
<strong>Cancer (June 21-July 22)</strong>
Today's New Moon is the perfect opportunity to think about what further training or education you could get to improve your job or enhance and enrich your life. You can also get further learning through travel. What are your plans? (Do you have any?)
<strong>Leo (July 23-Aug. 22)</strong>
You have a strong focus on debt, shared property, taxes, inheritances and anything you own jointly with others. In fact, today's New Moon verifies this focus. Continue to look for ways to reduce your debt and improve your overall position in shared finances.
<strong>Virgo (Aug. 23-Sept. 22)</strong>
The only New Moon directly opposite your sign all year is taking place today, which is why this is the perfect day to think about how you can improve your closest relationships and partnerships. Study these relationships to learn more about your style of relating to others.
<strong>Libra (Sept. 23-Oct. 22)</strong>
If you give it some thought, you will see ways to improve your health as well as ways to improve your job or how you do your job or even how to cultivate a better attitude to your job. These are the things today's New Moon offers you.
<strong>Scorpio (Oct. 23-Nov. 21)</strong>
Regardless of how willful and powerful you are, you are also playful. It is a trait Scorpio. The New Moon today is the best day all year to analyze just how much playtime you give yourself versus your work and other obligations. Are you happy with the balance?
<strong>Sagittarius (Nov. 22-Dec. 21)</strong>
What can you do to improve home, family and your relationships with family members? These are the questions that today's New Moon urges you to think about. Indeed, the New Moon is the perfect time for new resolutions.
<strong>Capricorn (Dec. 22-Jan. 19)</strong>
Think about your style of communicating with others on a daily basis as well as how you communicate to siblings, relatives and neighbours. Once a year, the New Moon urges you to observe your style of communicating, and that day is today. Oh my.
<strong>Aquarius (Jan. 20-Feb. 18)</strong>
Focused on cash flow, assets, earnings and how well you have control over your life through what you own. What can you do to improve this situation? These are the classic questions for today's New Moon - the only New Moon in this position all year.
<strong>Pisces (Feb. 19-March 20)</strong>
The only New Moon in your sign all year is taking place today. That makes this perfect time to take a realistic look in the mirror and ask yourself what you can do to improve the impression you create on your world.
<strong>If Your Birthday Is Today</strong>
TV Host/songwriter Alan Thicke (1947) shares your birthday today. You are creative. Many of you learn to perfect a particular technique. You are aware of your appearance and make an effort to look well pulled together. Plus you are charming, diplomatic and gracious and know how to keep things lighthearted and pleasant. Valuable skills! This year your focus will be on partnerships and close friendships. Enjoy!

Shakespeare, naturally, is another who never flinched. Romeo and Juliet is really a gothic love story, told in the shadow of death. Measure for Measure has the brutal soliloquy on the terror of death, from Portia’s imprisoned brother: “But to die, and goe we know not where / To lie in cold obstruction and to rot / This sensible warm motion to become / A kneaded clod.”

So much of what is memorable in language about death comes from this period in history, when brilliant, word-mad minds, in full intellectual fever, sought in language a means to state their fears in order, partially, to quell them.

But if you should want some lift from these dark and chilling ruminations, there is one 20th century poem by Wallace Stevens that has a, let us say, most pleasant tone, his “Sunday Morning.” For Stevens, “death is the mother of beauty; hence from her, alone / shall come fulfillment to our dreams / and our desires.”

How We Die Now: “Death renders all equal,” wrote Claudian. How each one of us relates to death, however, is individual, and always changing — as we mature; as we contemplate life, and death, around us; and as society changes. In this special series in the National Post, we present stories and columns looking at the different ways we see, and prepare for, the Great Equalizer. To read the complete series, click here.

For this weekend’s special edition of the National Post, we asked some of our finest writers to opine on the issue of death. Rex Murphy supplied an especially thought-provoking column, full of brilliant literary snippets from the great writers of the 17th century — a period that seems to have been a sort of golden age for ruminations on the fate that awaits us all. It makes for sombre reading: Sir Thomas Browne’s Discourse of the Sepulchral Urns lately found in Norfolk is not the sort of book that will lift you out of a down mood.

Yet elsewhere on these pages, Adam Leith Gollner helps remind us that, however much we fear it, death is very much a part of life — and indeed an essential part. Mr. Gollner describes the immortal struldbrug from Jonathan Swift’s Gulliver’s Travels,whom endless life has rendered cranky and useless. “They’re bitter, crotchety grumps whose message for the rest of us is that living forever might be the harshest curse imaginable,” Mr. Gollner writes. “We only imagine immortality being a good thing.”

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The idea that an endless life would be a hellish one is a curiously pervasive one in literature at all levels. In folk tales and Hollywood movies alike, the pursuit of immortality typically is associated with ghoulish sacrifices embarked upon by mad prophets and scientists, which end tragically for all concerned. Even in the comparatively whimsical world of the early Harry Potter novels, there is something lachrymose about the ageless ghosts who populate HogwartsSchool of Witchcraft and Wizardry. In one scene, for instance, at a “Deathday Party” for one of the resident apparitions, Harry and his friends encounter a candlelit dinner of rancid food. The foulness is a calculated aspect of the party-planning, because the ghosts can’t really taste anything. Only by serving the most foul fare imaginable can they even hope to detect its presence with their death-dulled senses.

Such stories, silly as they may seem to older readers, offer young readers a valuable lesson. When it comes to the march of science, be careful what you wish for. Even if scientists could make humans immortal, most of us, much like the struldbrugs, might well prefer abandoning this world entirely (preferably for a spiritual realm of the type Raymond J. Father Raymond J. de Souza alludes to in his column) rather than attain earthly immortality through cryogenics or the like.

But revisiting Shakespeare and the other great authors of his era takes us only so far, death-wise. For much has changed about the way we expire since Prince Hamlet asked of Yorick’s skull, “Where be your gibes now? Your gambols? Your songs? Your flashes of merriment, that were wont to set the table on a roar?” During the early 1600s in England, about 650 of every 1,000 children died before their fourth birthday. Even those who survived to adulthood lived till an average age of just 50. Now, by contrast, life expectancy in almost all developed countries (including Canada) is 80 or more. Infant mortality in Canada is about five per 1,000 live births — and amazingly, that is relatively high by Western standards: The Japanese are closing in on getting infant mortality below two deaths per 1,000 live births. We have not conquered death, but the great strides we have made in delaying its onset — especially in regard to children — must be considered the greatest single scientific accomplishment in the history of our species.

The reaper will not be denied. But he can be delayed. Here’s hoping, dear reader, that you manage this trick for another year, and that this will not be your last Halloween.

National Post

]]>http://news.nationalpost.com/full-comment/jonathan-kay-death-cant-live-with-it/feed/0stdCard_of_Destiny.png112115683Rituals of death: Atheists learning to honour a life in their own wayshttp://news.nationalpost.com//rituals-of-death-atheists-learning-to-honour-a-life-in-their-own-ways
http://news.nationalpost.com//rituals-of-death-atheists-learning-to-honour-a-life-in-their-own-ways#commentsSat, 26 Oct 2013 03:00:35 +0000http://life.nationalpost.com/?p=125195

How We Die Now: “Death renders all equal,” wrote Claudian. How each one of us relates to death, however, is individual, and always changing — as we mature; as we contemplate life, and death, around us; and as society changes. In this special series in the National Post, we present stories and columns looking at the different ways we see, and prepare for, the Great Equalizer. To read the complete series, click here.

Gretta Vosper occupies an unusual position in the Canadian landscape: she is an ordained minister in the United Church of Canada, and a committed atheist — a peculiar pairing if there ever was one. But for a new breed of atheists facing the prospect of death, she offers an ideal blend of ritual and meaning with an otherwise anti-spiritual philosophy. Particularly at the most poignant moment of their existence: Their death.

Ryan Pierse/Getty ImagesFireworks light up the skyline over Sydney Harbour during the midnight fireworks session as Sydney, Australia, Celebrates New Year's Eve with the theme of 'Time To Dream.'

Atheists may disdain the notion of a god and an afterlife, and yet many are inclined to want something more than just the scattering of some ashes and a few kind words of tribute to mark their deaths.

“There is an element of respecting this process of life and death,” says Ms. Vosper, who has become practiced at the art of the atheist funeral. “You just don’t go on to the next thing without taking a moment out of the ordinariness of life to respect something very profound just happened. It is simply part of the human make up to want to mark death and religion does not have to be part of it.”

Atheism’s ranks are swelling remarkably fast: An Ipsos Reid poll from 2011 found just 53% of Canadians said they believed in God (though that may not have included agnostics or people attached to some form of vague spirituality); that was a massive drop from 2000, when 84% of Canadians said they were believers.

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But in the face of death, all those atheists are missing the formal, traditional structures, rituals and meaning that come as part of faith. If death is not a passage to some other realm, marking it becomes something far more ambiguous.

“Atheists are confused as to what to do [in terms of ceremony],” says Ms. Vosper. “They are so angry and furious about funerals always being about God and the afterlife. So they can list a ton of things that they don’t want, including the usual religious language around funerals, but not what they want.”

David Berry spoke with Spurlock about being a fly on the wall instead of in the soup, how to get an unguarded moment out of a media-savvy pop star and all those screaming fans<strong>Documentarian Morgan Spurlock made his name by not just being in his films, but making himself the subject: movies like Supersize Me and The Greatest Movie Ever Sold relied on the filmmaker's cheerful willingness to put himself in uncomfortable situations, where his charm and energy had to carry the day. It's safe to say that none of that was even remotely relevant for One Direction: This Is Us, which documents the boy band's rise to worldwide superstardom, on the backs of a squealing fans who only seem dimly aware that there is even anything beyond Harry, Zayn, Niall, Liam and Louis. In an attempt to understand how he got his name under One Direction's, the National Post's David Berry spoke with Spurlock about being a fly on the wall instead of in the soup, how to get an unguarded moment out of a media-savvy pop star and all those screaming fans.</strong>
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<strong>The thing I'm most curious about is: how and why did you come to be making the One Direction movie?</strong>
I'll go back three years, when I first got called by Paramount about doing the Justin Bieber film. At that time, we were doing <em>The Greatest Movie Ever Sold,</em> so there was no way I could do it — chasing brands was a full time job. Last January, when I was shooting both <em>ComicCon</em> and <em>Mansome,</em> they called again about the Katy Perry film, and there was no way I could fit that in without tearing my eyeballs out. Come June, Sony called, and they asked if I'd ever heard of this band One Direction. And of course I had. They asked if I was interested in doing a film about them, and I was like, 'Absolutely. I'm not missing another one of these opportunities.' As a doc filmmaker, the opportunity to make a movie like this are few and far between: the scope and scale, the budget of a movie like this, the 3D, of a band that's still exploding as a global phenomenon, to be a fly on the wall of that. There's so much about this that's so attractive.
<blockquote class="pullquote">They're 19, 20 years old, and they know that they have this window that could blossom and continue on, but also could not</blockquote>
<strong>Your films tend to be pretty personality-driven, with you as the personality…</strong>
When they first met with me, I told them, 'Just so you know, I'm not going to be in one frame of this movie,' and they said, 'Great, that's a great place to start.' [Laughs]
<strong>How much of an adjustment was it, then, to take yourself out of it?</strong>
I don't feel like it was that much. We made a movie called <em>ComicCon 4</em> last year that was all about the biggest pop culture convention in the world, and I'm not in a frame of that, don't do voiceover, nothing. We showed that to them, and they were like, 'Oh, wow, he really can make a film that he's not in. Good for him!' I think that showed that I could make a movie that still had a heart, even if I wasn't that heart, and that I could make something that was respectful of fandom. Being a geek myself, I wanted to make sure ComicCon showed why that was important to people, and with a film like this, it was important to have that, too.
[caption id="attachment_125323" align="alignright" width="620"]<img class="size-large wp-image-125323" alt="Ian Gavan/Getty Images for Sony Pictures" src="http://nationalpostcom.files.wordpress.com/2013/08/odir.jpg?w=620&quot; width="620" height="464" /> Ian Gavan/Getty Images for Sony Pictures[/caption]
<strong>Fandom really runs through the film. What was it like for you to be dropped into this world, surrounding by teenage girls who were very, very excited about the band?</strong>
I have more teenage Twitter followers than probably any grown man on the planet. And it was incredible to witness. I've seen tonnes of fans and fandoms over my lifetime, but this is the closest thing to what I can only imagine Beatlemania was like: Girls chasing the band down the street, every single thing they do becomes news. It's incredible. To be a fly on the wall of that was exciting. Although for me it was also great to be able to leave and go home and have a normal life afterwards, which these guys can never do.
<strong>That aspect of the normal life comes up especially with the parents in the movie, who do seem to have kind of lost something of their kids; what made you want to include that story in the film? That seems like it's not the kind of thing you'd want to trouble fans with, that this has come at a cost to someone.</strong>
I think you have to kind of talk about the impact of this. I love the scene in the film where Liam's dad talks about how he didn't get to be a dad to his son. He didn't get to just go play pool with him, and have a pint. He didn't have much to offer him, except for the transition into manhood. So you hear that, and you realize there are things they've missed. There is a ripple effect to fame that comes out of this. It affects everyone: your friends, your family, it affects you, emotionally. These guys were taken away from home and put out on the road. They've chosen to do that, they're behind this ... they've realized the opportunity they have, and they should capitalize on it. They're very self-aware, these guys, and I give them a lot of credit for it: they're 19, 20 years old, and they know that they have this window that could blossom and continue on, but also could not.
<strong>That self-awareness: as a documentarian, wanting to be a fly on the wall, did you notice a change when the cameras came on? How savvy are they with a camera?</strong>
The good thing for us is that they spent two years before being media trained. They were already comfortable having a camera around. Where the discomfort came was that, usually they could leave the room and that was it, but now they're leaving and I'm following with the camera, back to the bus or the hotel or their homes. That was kind of a give and take — you have to build a trust to keep things real and natural. The plus side for us was that, ultimately, we weren't with each guy all the time. You have to that balance, where you don't feel like your life is being invaded.
[caption id="attachment_125325" align="alignright" width="620"]<img class="size-large wp-image-125325" alt="Stuart C. Wilson/Getty Images" src="http://nationalpostcom.files.wordpress.com/2013/08/od22.jpg?w=620&quot; width="620" height="464" /> Stuart C. Wilson/Getty Images[/caption]
<strong>Did you have any particular concert or band films in mind with this, or were you trying to approach it with a blank slate?</strong>
There are so many films growing up that you love, so you keep those in mind.<em> The Last Waltz</em> is perfect; <em>A Hard Day's Night</em> is fantastic; I loved Pink Floyd's <em>The Wall</em>. As we were making this film, I watched as many of those, that had an impact on me, as I could. But the biggest thing I wanted was that the film felt intimate: I wanted to make sure you felt like you really had access to these five guys, got into places with them that you otherwise would never have. And then the biggest thing with the story is that I wanted it to feel like one cohesive story. I feel like a lot of these films, you watch them and it's, 'Here's a concert, here's a doc, and we're going to force them together into one movie.' What I think this film does really well is create a narrative storyline where the doc feeds the concert and the concert feeds the footage, and it is one tale where each side reinforces the other.
<strong>Speaking of that, especially since you were in talks about those other films, how do you think this one compares to a few of those others, the Bieber movie, the Katy Perry one?</strong>
Well, this film has five guys in the band, so obviously it's going to be five times better automatically.
<strong>That's good; that's diplomatic.</strong>

Janice Meighan, founder of Toronto-based Rituals Without Borders, which develops non-religious liturgies for weddings, funerals and even the odd divorce, says people who grew up deeply religious often have a revulsion to anything that even looks or sounds like a church service.

But it’s those who grew up in secular homes that are now at the forefront of creating more formalized ceremonies. They are reclaiming notions of ritual and the sacred to create moving secular ceremonies. As time goes on, and more services are done, there are loose templates being created, Ms. Meighan says.

So instead of the usual psalm or scripture, the deceased’s favourite poem might be read aloud; music that meant a lot to the deceased, instead of hymns. “If they loved gardening, we might put bulb on a table and ask those in attendance to take them away and plant them in remembrance.”

Adds Ms. Vosper: “Each time I do a service people come up to me and say, ‘I’ve never seen anything like that or never experienced that kind of thing before.’ And it turns out they love it. And so, as it becomes more acceptable and appealing, it will grow.”

Ms. Meighan, who founded Rituals without Borders in 2007 after sensing that atheism was becoming more accepted and atheists more public about their beliefs, has had to be inventive in creating ceremonies that both look back on someone’s life while also finding a way to look forward, despite the lack of any notion of afterlife.

She recalls an atheist family whose grandfather passed away. The man, Don, had 12 grandchildren. He was 87 years old and had no belief in an afterlife. His wife told Ms. Meighan she did not want any religious readings or mention of God.

Ms. Meighan learned there were 12 distinct characteristics that had defined Don’s life — courage, strength, compassion, and so on — and each grandchild seemed to embody one of those characteristics. After the eulogies, each grandchild was asked to pledge that he or she would carry on the one of those traits, while lighting a candle in honour of their grandfather.

STEPHANE DE SAKUTIN/AFP/Getty ImagesMusicians perform in the streets of Johannesburg during the New Year's carnival.

Despite having become a committed atheist, after an evangelical upbringing, Martin Shoemaker considers a funeral “a very important ritual” even without religion.

“It has nothing to do with my religious upbringing, but I think bringing your tribe together is a very important thing to do,” says Dr. Shoemaker, who turned 70 this month and is a board member of the BC Humanist Association.

Having avoided it till recently, he has started thinking about his own funeral. Taking a cue from a favourite movie, he decided to make a video of himself — before he becomes “too grouchy and wrinkled” — where he can pass on some final words, as it is played for friends and family at a his funeral.

“I would talk about the awe I’ve always felt of how the Earth is placed in exactly the right position in relation to the Sun and our solar system that allowed life to form,” he says. “And so I’ll talk about what a mathematical improbability [it is] that any of us are here.”